On October 16, 2008, our then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. This is the story of our family, and specifically our son, Hank, as we struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.

Pages

Monday, June 12, 2017

We are in Seattle, and Hank is scheduled for surgery tomorrow. I'm not ready, it came too fast! I haven't updated this blog in a long time...we have an Internet stalker, who will probably reappear now...but I am taking my chances.

A little background... Hank had surgery last summer for a tissue revision. The goal was to move the tissue in his cheek up to mimic a cheekbone and support his eye. We knew at the time that Hank would need bone surgery, but were trying to buy some time. Because Hank was so young when his Parry Romberg started, his bones did not grow properly. But we weren't ready to commit to, in my mind, "dreaded bone surgery". Unfortunately, the surgery did not have the desired result as gravity was too much for the depressed bone.

One night in October, I stood with Hank in his room, as he got ready for a school dance. He was looking in the mirror and reached up and touched his cheek. "I think it's time for the bone surgery," he said. "It's time." And with those words, I reached out to his doctor, who referred us to a colleague in Seattle. (Dr. Siebert has been Hank's surgeon since 2008, but specializes in muscle and tissue...not bone.)

A month later, Hank and I found ourselves at Seattle Children's Hospital in the Craniofacial Clinic, meeting with a new team of surgeons. After 8 years of me leading the charge for Hank's healthcare, I found myself taking a backseat as the conversation took place between the surgeon and Hank. I was just there to fill in surgery dates. Hank was articulate and spoke of why exactly we were there. Together, the two of them and the rest of the surgical team came up with a plan! I was so proud of Hank! Age 15, with a full understanding of what needed to be done!

Which brings us to now....here, in Seattle for surgery. We flew in on Saturday from California. First things first...we found the nearest pizza place to feed our starving children!
In Madison, we were blessed to stay at the Ronald McDonald House during our stay for three surgeries. We were not able to get into the Seattle house, as Seattle is a big cancer center and the RMDH is full. On Sunday, we started the day at a beautiful old church, "Church of the Blessed Sacrament", where we went to mass and then asked the priest to bless Hank for his surgery. After a beautiful blessing, we headed out to Pike's Market where we immersed ourselves in everything from hat shopping to seafood eating to watching the fish throwing and more. And after numerous trips to Target, we found all the supplies we needed to make our stay here as comfortable as possible. We are staying at a cute vacation rental by owner (VRBO), which is the bottom floor of a three story house. I love the house...it is craftsman/bungalow style with beautiful finishes and an amazing garden! Added bonus is "Woody", the 3 month old Jack Russell Terrier that lives upstairs. The kids are in heaven!

Today was Pre-Op day. Hank had three appointments with his surgeon, Dr. Hopper and the surgical team, with the social worker, anesthesiologist and the photographer. He was weighed, measured, and all the procedures were explained fully. Hank shared his concerns and all questions were answered. The only unhappy thing for us was being told the whole family would not be able to wait with Hank in pre-surgery and none of us would see him in recovery. To come all this way together and to go through 6 surgeries as a close knit group, this was new...unexpected...and not what we hoped for. It also looked like I would not be able to accompany Hank to the OR, as I have for all the other surgeries. "It's OK, Mom, I'll be OK", Hank told me, when I saw the look of disappointment on my face. So brave...braver than I...and I'm sure he really is OK with it...but I'm not...I want to be there...just to see everything and to hold his hand...or maybe he is holding MY hand...

Dr. Hopper explaining the procedure

So with all appointments done...we went out and had burgers and fries and all things comforting. The next day was going to be stressful...and all I wanted to do was gather this little family together and hide away for the night. Which is exactly what we are doing. Tomorrow will be amazing...a new adventure...a new journey for Hank. Hank is getting his cheekbone back. A step in repairing what this awful disease has done. But I love his face now. I love his smile and his shining eyes! I know he needs this. He needs to support that eye...but I don't ever want him to think he needs to look better...he is handsome from the inside out. But medically, he needs this and ultimately it was his decision to move forward with this. I am proud of this boy, and can't wait for this to be done so he can get on with life!

First night in Seattle!

Blessed Sacrament Church:

Pike's Place Market:

The Troll Under the Bridge:

Pre-Op at Seattle Children's Hospital

Hank with Dr. Hopper and the Craniofacial Surgical Team

The weight of the world...

In the days leading up to surgery, there were many times I would catch him like this. He has a lot on his mind.